6 Months, 3 Posts....What Gives? Now What?

It's been nearly 6 months since I started this blog, and I got through the technical stuff, but then I stopped posting. In the beginning, I started this blog thinking: I’ll educate
people about lyme with a diary of my disease and how bad it is, so that they
will check themselves more often, and by showing maps it would help people in
endemic and epidemic areas just how much their risk is increased and how to get
help, and as a bonus I get to have a daily diary of my illness and recovery to
show just what it looks like... and not only as a way to track the progression of my treatment for myself, but for others to read to help them get through lyme treatment, to know what to expect in real terms and what they were getting into and AND AND blah blah BLAHBITY BLAH!!!…… Just like all the other blogs. Well, the good ones anyway.

Except....

Except I didn't know how bad it would be. I was so blind to how much this treatment and the disease would ravage my body AND my mind. I literally lost my mind. I lost hours, days, weeks.... It feels like I woke up one day and I had turned a corner and could think again, but that was just a few weeks ago... 5 months into treatment. That was the first time I felt like writing about anything substantial here. Because I thought it all had to be substantial. But now I realize that all it has to be is real.

Honestly
I want to get some attention, because the issue of officially approved lyme treatment and it's efficacy is a political minefield, [WHY
is an epidemic tick borne DISEASE a political minefield? Oh, you. You’re so
cute. We’ll get to that later] and it shouldn’t be. It should be about the
victims, the patients, the families and the doctors who are willing to risk
their practice, their safety sometimes their license for treating lyme patients
with proven effective protocols. This disease…. It’s ridiculous that it is
being ignored in the way that it is by parts of the medical community
even. But in the middle of a time when I
was just realizing just how heavy my eyelashes are, that didn’t sound like
something I wanted to talk about. I started out wanting to be the blog with the information AND the real experience. And maybe someday it will be. But that day isn't today.

I have far too much to say about lyme, and far too much lyme still in my system to do it from scratch, and I can't go back and tell my story without some reference material. So here's the deal. I will still be telling my story in chronological order in these posts. But I will be using my facebook posts verbatim with the date and time of the post, sometimes with commentary, sometimes without, with the date that the post is being written... but it will still be in chronological order here. I will let myself tell the story. There are large gaps in my facbook activity, and in those times I will explain what is happening and why I am not posting. Since I can post instantly to facebook from my phone, I thought that this would be the easiest way to track my mental and physical state. If I can't type clearly and post to facebook with my smartphone.... it's a bad bad time. I will also be asking my husband and my friend and caregiver Justine to write posts as well during the down time in activity, because they were the lucid ones watching me go through this. I've been warned that it won't always be pretty and may be hard for me to read, but it needs to be real. Someone has to tell their ugly, gory, scary, heartbreaking, painful, smart, spiritual and hopefully triumphant story. But that remains to be seen.

There have been major elections, natural disasters, political scandals, national crises.... that I will never remember being alive for. It has been 2 years since all of this pain started. 2 whole years on pain killers, 18 months of which was just a pacifier and a bandaid over "we don't know what's wrong with you". The last 6 months have been the best and absolute worst of my life. Finally having an answer was the most freeing thing, the most precious gift I've ever been given (aside from my daughter). Spending a lifetime feeling like doctors were missing something big, and having them look at you like a drug seeking hypochondriac and FINALLY knowing I wasn't crazy all that time? I just can't describe what it's like.

The function of the MTHFR gene is simply to produce the MTHFR enzyme. However, if the MTHFR gene is mutated, the enzyme produced is not entirely correct.

But then.... there are all the pills, somewhere in the 50s, 60s per day maybe? : the antibiotics, antimicrobials, anticytokine, anti-inflammatory, probiotics, specially metabolized vitamins for my MTHFR, IV glutathione injections to correct for MTHFR, sleeping pills, antispasmodics, muscle relaxers, pain pills, anti-nausea pills for the antibiotic that kills the lyme. All the side effects, all the pain from the lyme dying, the pain from the lyme fighting, the exhaustion, the guilt.... oh my god the guilt. Why didn’t this all come up sooner in my life? Why can't I walk today? How much more was there to lose? How can I take care of my daughter? Where had my car keys gone? Why can’t I remember my name? When was the last time the water bill was paid? Why does it suddenly take so much energy to blink? What day is it? Why do I exist?

WHY DO I EXIST LIKE THIS? why.

....to do this?? To watch years pass? There has to be more.

And there is.

There is always more.

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The Three Stages of Lyme Disease

Lyme Disease is one of several tick borne illnesses that are often invisible not only to the outside world, but also to doctors and often the patients themselves. Lyme in the initial stages can be difficult to detect because everyone has a different reaction to the bacteria. It can be more difficult if you are bit by a nymph which is the size of a poppy seed, and even worse if that tiny beast gets into your hair. Deer Ticks are the most prevalent carriers of the lyme spirochetes, however, any tick could potentially have transmit the disease. Even if it's rare....

STAGE 1: IDENTIFICATION AND TREATMENT HERE ARE THE MOST CRITICAL,NEVER IGNORE A TICK BITE!

If you are bit by a tick and have a tick spoon (which we will have available both here and on our fundraising site very soon), get it into a container (dead or alive), go to your doctor immediately and have them give you and the tick a once over. If you can't save it, it's still critical that you see your If they are familiar with the risks of untreated lyme disease, they will give you a short course of antibiotics and *dingdong* the lyme is dead. If they AREN'T familiar, now YOU are and you can educate your doctor and ask for a course of antibiotics.

Now, if you think you can't contract lyme disease because you don't live in the epidemic or endemic areas, or didn't get the telltale red target rash, know that about 50% of infected lyme patients never get a rash. Please do me a personal favor if you are in this situation. Keep a log daily of how you are feeling for the next 6 weeks. If you wait, and don't get a rash but start to get mild flu-like symptoms, headaches, unexplained joint pain and a host of strange, seemingly disconnected symptoms within 6 weeks of the bite, you now have a daily log to show to your doctor, explain the tick experience, and with your newfound knowledge you know what will happen if this goes untreated you have a good chance of getting treated. With a knowledgable doctor they will put you on a longer course of antibiotics, and you've got an excellent chance of never seeing or hearing from those spirochetes again. You've just been through Stage 1 [time of bite - 6 weeks].

Let's say you go for a hike, are camping, fishing, hunting, or are just generally out among the trees and flowers, enjoying your day. And as a responsible outdoors [wo]man, you inspect yourself carefully for ticks when you get home. If you have a significant other, this could be an interesting activity if you get extra thorough. But that's a COMPLETELY different page :)

You don't find any ticks. You don't get a rash. You feel fine.... for a while. Then you start getting sick. Your immune system seems to be crashing, your joints begin to hurt, your memory starts to get a bit off and your mood unstable, you may have indeed been bit by a tick in a place that once it was done it fell off, never to be heard from again. This is where I urge anyone who spends any time outside to keep a journal of your activities with dates, any bites from ANY bugs, and notes with symptoms. That way if 4 months later your symptoms come up, you can identify that you were indeed outdoors in an endemic or epidemic area and are a likely candidate for a tick bite. SEE YOU DOCTOR. If he doesn't have any idea that you could have lyme from your log or from your symptoms SEE ANOTHER DOCTOR.Go to www.ilads.com and find a lyme literate doctor near you. Or PM me and I can try to connect you with someone in your area that can help. But at this stage it is CRITICAL that you get intensive treatment, because this is STAGE 2, and it goes only from 6 weeks to 6 MONTHS of exposure. After this, Stage 3, gets extremely complicated.

STAGE 3: YOU ARE NOW IN LATE-STAGE LYME DISEASE, THE GREAT IMITATOR, THE SEARCH FOR ANSWERS THAT NEVER ENDS.... UNTIL IT DOES. AND THE ANSWER IS LYME FOR LIFE.

Once you get to Stage 3, things get a pretty difficult. Lyme Disease Bacteria do not discriminate where they go once in your body. It could be tendonitis, then migraines, then thyroid issues. For the next person it could be memory issues, rheumatoid arthritis, and endometriosis. If it goes into your gut/intestines, it can cause leaky gut syndrome which opens you up to a whole host of issues like weight gain, food allergies, autoimmune conditions, skin conditions, thyroid imbalance, hormone imbalance, adrenal fatigue, gallbladder infection/stones, kidney stones or infection, and the list goes on and on. It really does affect everyone differently, which is why at this stage it is important to find a reputable Lyme Literate doctor. For some reason, there is still controversy over the treatment protocols for late stage lyme, so it may depend on your area how easily you can find a good doctor. Some will identify themselves with the suffix LLMD instead of just MD. You can go to www.ilads.com to find a doctor near you. No matter where you are in the country, my doctor, Dr. Marty Ross, LLMD can help you as well. Whether it's with initial diagnosis in person and then follow up visits via skype, or helping you find resources in your area, he is one of the best.

At some point during this post, for some of you, a lightbulb may have gone off, whether for you or someone you know. EVEN IF YOU'RE WRONG, talk about it. At this point it could be the difference between 2 years of painful treatment vs. a lifetime of the wrong diagnoses with meds and therapies that never help. I've had this disease for 30 years. Of this, I know.

JUDGMENT DISCLAIMER FOR YOURSELF, YOUR FRIENDS AND FAMILY:

If you get to stage 2 or 3, do not blame yourself. If you were infected as a child, do not blame your parents or let them blame themselves. Lyme disease bacteria don't discriminate which ticks they infect, and the ticks don't discriminate which body they latch onto. Once they go in your body, it can look like a lot of small disconnected illnesses until you have a large trauma or extensive surgery from which you never seem to recover. It can be difficult to hear that after you've been through a painful procedure or a heartbreaking emotional trauma that you now have a debilitating disease that you will have in some form for the rest of your life. Something I will talk about in a later post is that there isn't one easy little test that you can go into your doctor to say definitively YES or NO whether you have lyme (you can thank the CDC for that one). Lyme is a clinical diagnosis, so until you begin showing signs and symptoms, you cannot be effectively diagnosed. So if you start getting illnesses that don't seem connected, find a multisystem disease specialist.Lyme Disease is a CDC recognized tick borne infectious disease, not something your local MD may be versed in. Also, not something that you can cure with diet, fecal transplants, or being the perfect specimen of a human being. When we get to my history you will see that at several points in my life I had been in the "non-sick" phases. But those were always the commas, not the content of my life.If any of this rings a bell, turns a light on, blows softly in your ear or slaps you across the face: GET HELP, FIGHT HARD, TELL OTHERS, AND PAY YOUR KNOWLEDGE FORWARD. You won't regret it.

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How Did You Contract Lyme Disease?

For many people, contracting lyme disease can be something that goes like this:

Scenario 1:

Hey, let's go outside, maybe for a hike, or a swim in a lake, or hang out in a generally wooded area. Sure, sounds good!

Later that day they discover a tick attached to their body. If this is their first tick bite, and it is after the early 90s, they will immediately freak out, but then figure out how to detach it safely, and then go to their doctor. If you save the tick, you can sometimes confirm lyme, sometimes not. If you go on to the "watchful waiting" stage, you will wait to see if a bullseye rash appears near the bite site. Some doctors in endemic and epidemic areas will immediately put you on a course of antibiotics and the young disease will be on it's way out of your body, with nary a symptom.